Myself, quantified

by danhon

So at the end of January this year, I got diagnosed with Type 2 Diabetes.

It’s the kind you get if you live in the west, eat quite a bit and don’t exercise enough. It means, more or less, that you have too much glucose in your blood and your insulin isn’t able to get all of it into your cells, where it can be used. Bad things happen if this goes on for too long.

A couple years ago, I’d seen my GP in London and he’d told me I was pre-diabetic. What that meant, he said, was that if I didn’t change my behaviour, I would develop Type 2 Diabetes. He gave me a blood sugar meter, told me to test myself and to eat better and exercise more. I also got to see a nurse, had my retinas looked at and my feet checked, because (as we all know), diabetic people end up with no feet. No joke.

At the end of 2010, I looked a bit like this:

Me and Roo Reynolds after the W+K Christmas Party 2010. I am wearing reindeer antlers. Roo, wisely, is not.

And at the beginning of 2012, I probably didn’t look that much different. Minus the reindeer antlers, of course. The picture’s not the interesting thing, though.

Two interesting things happened during an appointment with my primary care doctor at the end of January 2012.

I had seem him for a physical at the beginning of December and had told him about me being pre-diabetic. He had me shipped downstairs to have my %HbA1c taken – a long-term measure of blood sugar, and on the same day, packed me off with another blood glucose monitor and exhortations to exercise and eat better.

Diabetic people have an %HbA1c of 6.5% and higher. 12.2% is nearly double.

My %HbA1c meant, he said, that I would be injecting myself with insulin in the future.

No two ways about it.

He would start me on metformin, a medication that increases sensitivity to insulin, and set me up with a diabetic nurse. And hopefully I wouldn’t lose any feet.

Oh, and I should eat better and exercise. But I probably wouldn’t. Hence the metformin. Because eating better and exercising is hard, and he was being pragmatic, and he would rather save people (and, by extension, their feet) than be dogmatic about prescribing medication.

I approved of his foot-positive attitude, but was severely upset about a quite clear and inevitable future where I would be regularly sticking myself with an insulin injection.

So I left the clinic with a newfound resolve to eat better and exercise. Not because I was filled with the need to avert a machine-dominated totalitarian new-aesthetic future (see above), but because I didn’t want to have to do this all the time:

Let’s be clear about this. I left the clinic that day incredibly upset. Not that I couldn’t see this coming. But — and I think this is pretty crucial — it was less about the number and more about what the number meant, and how what that number meant was delivered.

I was going to be injecting myself with insulin. I wasn’t going to be able to prevent it. And once it started, it would continue for the rest of my life.

If I have to be completely honest, I was clearly not worried enough to do anything about it when I’d been repeatedly told I was pre-diabetic.

But now?

Inject myself with insulin forever? Fuck that.

Accept a medical prognosis backed up with a lab test and, most likely, thousands of studies?

Challenge accepted.

So a few things happened.

On 6 December 2011, I got a Lifescan OneTouch Ultramini blood glucose meter and I started taking my blood sugar first thing in the morning and before and after every meal.

On 8 December, having seen that there was no Mac software provided by Lifescan for the glucose meter and registered to read their hardware documentation and given up, I found Glooko, downloaded their app and ordered a meter sync cable from Amazon.

On 11 January 2012 I got back from my Christmas holiday and set up the Withings scale I got for Christmas, measuring my weight each day.

That’s my Withings scale data. Pink line is my weight. Yellow line is my fat percentage. As of writing, I’ve lost around 30 pounds since the beginning of the year.

Here’s a slightly sexier version in Weightbot, a very pretty iOS app by Tapbots:

This is what over 400 rows of blood sugar testing data looks like:

And this is what my %HbA1c looked like in March:

And this is what my runs look like:

… and while I could scrape a JSON feed of all my Nike+ Fuelband data, one of the ways it looks is this, all chock full of trophies and achievements:

There are a few things I’ve learned from this.

We’re still in early adopter land for personal health data

I love data, but I don’t think I’m typical. Right now, I think very few (less than five?) of my friends have blood sugar meters and access to the data in them (although diabetes isn’t something that many people talk about). About the same number of my friends have Withings scales. I think no one I know has a Withings blood pressure meter. While I think less than ten of my friends have Fitbits, thirty one(!) of my Facebook friends have Nike+ Fuelband devices. But this probably reflects the fact that I work with a lot of people who work on, or with, Nike now. I have no idea how many of my friends are on Nike+ Running. I do know that about 17 of my Facebook friends are on Runkeeper.

Silos everywhere

Runkeeper appears to be doing a good job of enabling some sort of Health Graph – in fact, they even call it that. At the moment, my data is all over the place. Some of it is in a Nike silo. Some of it, mainly from my health insurer and my doctors, is in some sort of vault run by WebMD, because my insurer doesn’t use Microsoft Healthvault. Google Health doesn’t even exist anymore. The Withings data is exportable all over the place and can be imported into Runkeeper via their Health Graph, but my Glooko data exists inside of a nice shiny app or a CSV or a PDF I can show to my healthcare professional. Lifescan, the people who make my blood sugar meter, don’t even have a Mac app.

This siloed data approach is only going to get worse until someone dies because no one was able to get access to their health information and it was patently, obviously there.

A short rant about experience design and blood sugar meters

Incumbents rarely produce great experience design. They don’t have to, and they typically are dealing with historical monopolies on consumers or audiences. But there are also some first movers who don’t seem to have improved their experience over time. I’m looking at you, Withings. It’s a bit embarrassing that Weightbot has a much better mobile app than you do, and you’re selling the hardware.

In the blood glucose testing market, it looks like patents (as ever) are acting to stop newcomers to the market, particularly patents in the device and strips. It’s complicated: they have a very heavily integrated solution and, from what I can make out, rely on insurance providers in the US. The copay I’m charged for 100 blood sugar testing strips is $10. If I’m paying retail, it’s about $110. When I’m testing up to six times a day, that’s nearly 200 strips a month.

Now, if I were being overly cynical, I’d say that the interests of a company producing blood sugar meters and strips aren’t necessarily aligned with the interests of a patient who wants to stop having diabetes. From my absolutely scientific sample size of one (me), testing before and after every single meal, and testing a fasting blood sugar in the morning has been vital to me getting my blood sugar under control. It’s meant that I’ve learned what I can eat and how much, and crucially, that I can still have burgers. If I eat less burger. And more salad. But: I can still eat burgers.

What people with diabetes should have — especially people diagnosed with type 2 diabetes — is access to cheap blood testing monitors (oh, but they are cheap! The manufacturers give them away, and then charge you for the strips in a model you might be familiar with) that are easy to use and help you see trends over time, and, cheap blood testing strips that let you test at least before and after each meal every day. If you’re on, say, Medicaid, and you can afford one testing strip a day, I don’t think the success rate of people learning trends and altering their behaviour is going to be that high.

If I were still in the startup game, I have a pretty good idea of which industry I’d want to disrupt.

Numbers

I have a pretty strong opinion on gamification. Especially the kind of gamification where you give people a number and pretty much nothing else, let them rank themselves amongst their friends and let rip. So it’s especially galling when I know that that’s what’s being done to me and it still works.

My hunch is that it won’t work for long and that pretty soon we’ll all have far too many numbers to be tracking. At which point the problem (if you are a company in the business of selling people numbers to track) becomes – how do I get you to care about this number instead of that number? Because when it comes down to it, I’m pretty sure Adidas and Fitbit and Nike will more or less be tracking the same thing.

Achievements, levels etc.

I am sick of them. I have too many of them now.

Anyway. In conclusion:

My doctor gave me some bad news, I decided I didn’t believe him, I lost a tonne of weight and I feel awesome. Data saved my life.

Update June 21 2012: My most recent %HbA1c is 5.4%, well within the normal range.

Disclosure: I work on Nike as global interactive creative director at Wieden+Kennedy in Portland. We handled part of the launch of the Nike+ Fuelband and continue to work on it and some of their other digital sport products.

One company I’ve come across that I think you should look into is TicTrac: (http://www.tictrac.com/). They have some pretty interesting ideas about bringing all this data together into one place and giving you access to it all whenever and however you want.

Worth looking into.

Best

johndodds

Great post Dan. Your point about data-satiation is a very good one. I’ve been attending QS meet-ups in London for some time and am ceaselessly impressed by the ingenuity and thoroughness of people’s efforts, but those efforts equally identify them as completely atypical of the population as a whole in terms of dedication and numeracy.

In fact, I’m not one of them either. I got fitter about three years ago and exercise very regularly but I’ve never captured any data, I can just see and feel the fitness. Data is great but it’s only potentially useful to people who understand what it means and in cases where there is no undeniable physical symptoms.

I’d argue that anyone who has met you in the past would have surmised that your calorie/exercise balance was a tad sub-optimal. You knew it as well. So it wasn’t data that saved your life – (the data didn’t tell you anything you didn’t really know already) – it was a scary reality check from a doctor and your indignation at the doctor’s explicit questioning of your ability to change behaviour.

The future is not going to be about selling numbers to people – it’s about selling easy, enjoyable good health and its attendant benefits to people. It’s about prevention rather than remedy. And rather than a primary motivation (as it is for geeks) data is going to be a subsidiary consideration as much to do with trend as it is goal.

Congratulations on your achievements and if your presence in London ever coincides with a QS meet-up, there’s an audience waiting to hear more.

Hugh Tauerner

I have a One-Touch Ultra that I bought the cable and software for — way back in 2005 (when I was first diagnosed as Type 2). The software sucked. I could email the results to my provider, but not myself. I could create and print reports but not export the data. FWIW, the software used MS Access.

Starting from an A1c of 7.5%, I got down to 6.2% and spent 6 years fluctuating between those 2 numbers. I lost about 30lb in that time eating kinda-sorta-low(ish) carbs. Until December 2011 when my A1c hit an all time high of 7.7% and my PCP started muttering about insulin. I persuaded her to let me have one last try with Januvia (which I’d not tried before). What I didn’t tell her was that I intended to go very low carb.

It took me a couple of weeks to really get the hang of it, but my A1c in February (after 1 month low carb) was 6.9%. I did a home A1c a couple of weeks ago and got 5.8%. I’m generally seeing blood glucose numbers in the pre-diabetic and normal range.

I manually type my numbers into an Excel spreadsheet. When I get blood test results from my doctor, they go in there too.

I use http://paleotrack.com/ to keep track of what I eat (and get an analysis of the nutrient content) a summary of that data also goes into my spreadsheet.

There are a couple of websites you might find helpful: http://www.diabetes-warrior.net/ and http://www.marksdailyapple.com/diabetes/#axzz1u1rGNcwF They’ve both been very helpful and informative for me.

FWIW, while I’ve only lost another 10lb or so this year, my blood glucose numbers are good enough that I was able to stop taking the medications (Metformin and Januvia) at the end of March.

While it would be nice to have all the numbers in one easy to find place, and have them automagically upload from the various sources, I find that having to make the effort to enter the data keeps me mindful of what I’m doing.

Bottom line: I’ll do whatever works to keep me healthy. Right now, that’s lots of measuring and recording and eating a very low carb (<30g/day) diet which excludes grains and added sugar.

I have had type 1 diabetes for 33 years. After putting on a lot of weight in my early thirties I decided to start exercising and I now do seven hours of cardiovascular exercise each week. I lost weight (about 15 kilos – 35 lbs), lowered my blood cholesterol (another beneficial side effect of sport) and generally felt much better.

I understand your point about the cost of the blood testing strips. However, I grew up in a period when these devices did not exist. We had to do urine tests and the diet carbohydrate control was much stricter. Effectively, in the late seventies and early eighties the equipment to do blood glucose tests only existed in hospitals (the device was the size of a washing machine). This meant that you went into hospital to have the medical staff balance your carbohydrate intake with the insulin injections based on an average level of physical activity. These were then fixed and immovable once the patient left hospital. This was woefully inaccurate and inflexible, since it was not possible to adapt food intake and insulin dosage because you could not follow your own glucose levels. I had to weigh my food accurately and be acutely aware of the levels of carbohydrate in all foods at a time when food labelling was not as clear as it is now. Plus hypoglycaemia was a common problem when there were unexpected demands placed on my energy requirements.

The home blood glucose meters which came onto the market in the late eighties/early nineties were based on oxygen electrode technology linked to an immobilised form of the enzyme glucose oxidase. They were a real innovation and took over a decade of very expensive research to develop to a commercial product (the company that first brought these devices onto the market was Medisense in the UK). In order for the company that invested in these products to recoup its high development costs, it absolutely needed to have a patent. Otherwise competitors could have copied their invention without having to recoup the development costs and so they would have been able to sell at a lower price having made no contribution to the available technology. The 20 year monopoly given is a reward for the considerable costs of investing in new technology and once the patent expires, all and sundry can copy the technology, after the initial innovator has recovered the considerable costs of R&D and so the price drops dramatically. The upshot is that now I have much better control of my blood sugar and I am able to fine tune food intake and insulin as well as adapt to changes in my daily routine, such as when I travel or when I am ill. This has led to a vast improvement in diabetes care and control, longer life expectancy and a greatly improved quality of life.

I think that the problem in the US is to do with the structure of your healthcare provision, which is piecemeal and depends primarily on the goodwill of your employer, if you have one. In Europe everyone is covered. It may seem expensive, but in fact the health care industry is highly regulated and this keeps costs down below US levels. In the US the costs are raised in particular by high levels of litigation. The state or insurer (depending on which European country we are speaking of) pays similar prices for treatment, drugs and devices such as test sticks, but being less litigious, less money is sucked out of the system for purposes which do not serve the primary goal of healthcare. All healthcare providers in the US must have a lot of very expensive legal insurance and this raises costs.

Hi, I am impress, Congratulation. You showed a strong will against odds, Do you know if Nike support adventures with study groups to reply your experience in Childrens with insulin resistance.
Best regards,
Erwin.